Peer advocates supporting older people affected by cancer

Tag Archives: ICANN

Mike’s Story, recently released on OPAAL’s YouTube channel highlights some of the many issues advocates support older people affected by cancer with. Mike talks about the impact of his cancer diagnosis, how his life was taken over by the thought of cancer and how things changed for him when he was introduced to Bob, his volunteer peer advocate. This story was produced under our Older People’s Cancer Voices work programme, and we have been identifying other stories for future filming.

Today we have a related post written by Aneesah Bana, the Cancer, Older People and Advocacy project advocate from delivery partner ICANN. Aneesah tells us about working with a client who was considering being the subject of one of our Older People’s Cancer Voices films:

When I was approached by OPAAL to identify a client that would be willing to participate in making a short film about their personal ‘cancer journey’ and how advocacy support facilitated them I initially thought I had the ‘ideal’ client who not only made profound changes to her life but was truly inspiring as a person who in the face of various adversities continued to not only remain positive but actually viewed her cancer diagnosis as a ‘blessing in disguise’.

Prior to diagnosis my client led a life that could be described as emotionally and physically chaotic. This started from childhood where she was the youngest from a family of six children. Events beyond my clients control were to shape and mould her childhood and many years into her adult life.

My client’s mother had abandoned her family when she was a child. With a physically and sexually abusive father my client grew up in an environment where neglect and mistreatment became the norm. These early childhood experiences were followed into early adult life as my client went into one abusive relationship to the next. To cope with the continuous emotional trauma ‘x’ became heavily dependent on alcohol and was also a heavy smoker.

I met ‘x’ as an advocate as she was diagnosed with throat and mouth cancer. At the point of meeting ‘x’ had given up alcohol and was successful at stopping smoking. Although my first meeting was to assist her during a DWP meeting I was genuinely intrigued at what prompted her change in lifestyle as my own previous employment role was in child protection and very rarely did I come across individuals who not only had a very clear insight of their problems but could identify the cycle of abuse and how she was able to stop this.

Although my support with ‘x’ began on a more practical level where I aided her with benefits and appointments this moved on to something far more deep rooted as various dormant and repressed emotional issues came to surface.

‘X’ recognised that her choice in lifestyle was a direct result of severe early childhood trauma. When she was diagnosed with cancer many of these supressed feelings emerged. Consequently she would often tell me of experiencing vivid nightmares and flashbacks of what had happened. I was able to get ‘x’ specialist counselling which dealt with people who were diagnosed with cancer as they also recognised that it was not unusual for people diagnosed to resurface repressed emotional hardships when diagnosed and particularly once treatment has ended.

Over the course of a few months ‘x’ attended the sessions and the changes to her mental attitude were very apparent to see.

We often discussed how throughout life she was not able to recognise that it was healthy to have boundaries, particularly in intimate relationships but also with her own children. As over the years her relationship with her children also became strained as she felt that they too would on occasions manipulate her emotionally. Ultimately ‘x’ discovered that at times it is actually better to say ‘no’ to situations that inherently made her feel uncomfortable.

With these new found healthier boundaries however came more difficulties as she began to put them into place with her own children. Although ‘x’ faced this new difficulty she sincerely acknowledged that they were necessary.

The healthier emotional change also to a certain degree instigated a physical transformation. Where she once again started to take care of her herself and her appearance.

Due to these changes I initially felt that she herself would sincerely benefit by participating in the film. I was of the opinion that ‘x’ could not only visually see how far she had come but hopefully inspire others who are going through a similar experience.

Initially when I asked ‘x’ if she would like to participate in the film she was excited at the prospect and consequently I arranged a meeting with Justin the film maker.

Aneesah

At the meeting we discussed various issues and ‘x’ was very open about her experiences and how I as an advocate aided her. Throughout the discussion ‘x’ was very complimentary of the advocacy service and it was only after the meeting that I was able to help ‘x’ recognise that the changes actually came and were directed from her and I was able to merely facilitate them. Ultimately after the group meeting when I spoke to ‘x’ there was a sense of genuine self-acknowledgement at how far she had come.

Unfortunately soon after ‘x’ decided that she did not want to participate in the film citing that she was not comfortable and that she recognised that her privacy was important.

The old ‘x’ would have been to uncomfortable and would have attempted to appease myself and Justin in fear not to offend or inconvenience anyone by going along , when deep down it’s not what she would have wanted.

Ironically it is just the fact that she was confident to say ‘no’ to the film that made me realise that as an advocate my job was somewhat complete as her privacy was a ‘boundary’ and the new ‘x’ confidently put it into place!

Aneesah, advocate at our delivery partner ICANN, tells us about Valerie (not her real name) and her issues around divulging that she is HIV:

I received a referral for Valerie who had used us as a service in our previous advocacy work. She was diagnosed with breast cancer but was in the very early stages of recovery. Therefore, she was extremely emotional when we initially met. Because I already had an established relationship in our previous advocacy service Valerie felt comfortable to talk to me openly about her feelings and concerns.

Valerie’s ethnicity and cultural background played an important role in how she felt and how she mentally perceived how she should be handling her medical problems. She’s from African descent and although she was living with her sister she was of the strong opinion that she needed to be emotionally strong and expressing her true feelings and worries was a great sign of weakness. Yet equally it was clear to me that these vulnerabilities and insecurities were taking a very big toll on her and was having a far deeper rooted impact on her mental health.

These feelings of guilt and shame were exasperated as she had also been diagnosed as HIV positive some years ago. Due to Valerie’s concerns she felt that this was another medical condition that needed to be keep hidden. What came through in our conversations was that although fortunately she had a very good and trusting relationship with her consultant the diagnosis of breast cancer meant that she had to constantly disclose the fact that she was HIV positive to other medical health professionals, particularly during the period she was undergoing chemotherapy as the requirement was to have regular blood count checks. Because she was highly conscious and anxious about her diagnosis of HIV coming to light, she found the whole treatment procedure very tense and traumatic.

By the time she established contact with me she had many unexplored and suppressed worries. Her main reason for contact was an approaching benefits assessment. Valerie felt she was forced into a situation where she would have no choice but to discuss medical issues she was highly uncomfortable with.

In our meetings which followed over a couple of weeks I was able to talk and reassure her that she should not feel shame or guilt towards her condition. As time went on we met regularly and Valerie was able to make the vital step of being able to talk about her condition without supressing her true feelings. I was able to reassure her that for the purpose of the benefit assessment it was vital to disclose both of her medical conditions in depth as her eligibility would depend on this.

Aneesah

Over time I was able to build a trusting and secure relationship with Valerie and this really helped me to advocate on her behalf. Consequently when we were in the assessment she was able to depend on me to talk on her behalf on occasions when she found things difficult to explain to the assessor or when she became uncomfortable.

As a result, Valerie was successful in receiving the benefit and the experience allowed her to recognise that professionals in general work using the ethic and principles of being impartial and non-judgmental. The experience clearly demonstrated to her that although she felt that by disclosing her medical conditions she would be judged and perceived in a negative and possibly prejudiced way, this in reality was clearly not the case.

As a result of this experience and advocacy support we were then able to arrange specialist focused counselling services as a more long term plan to deal with her anxieties.

This particular experience demonstrated to me and to Valerie that by working on her emotional insecurities and coming to terms with her health condition it was going to enable her to consciously make the effort to attend future appointments in relation to regular health checks at the hospital. Ultimately advocacy support empowered her to be in control of her health, which hopefully now will contribute to improving her quality of life.

Did you know that as part of our work we’ve developed Quality Standards for the provision of advocacy support for older people affected by cancer? The standards set out what clients should expect when they receive independent cancer advocacy services. They are the standards that are demonstrated on a day-to-day basis by good older people’s cancer advocacy services.

The standards are a way of us reinforcing and demonstrating professionalism and commitment in our cancer advocacy service delivery. There are organisational, partnership, monitoring and evaluation, service provision and training, supervision and support standards. Each standard contains a series of statements that, taken together, signify what a good older people’s cancer advocacy service looks like. It puts the interests of clients first, is safe and effective and promotes trust through a professional and person centred approach.

ICANN is the first of our delivery partners to go through the cancer advocacy Quality Standards audit process and we’re delighted to say, the first to receive their compliance certificate from OPAAL. Many congratulations to them.

In today’s blog post, Sandra from ICANN tells us about the process:

As a volunteer with ICANN based in Preston Lancashire, I was flattered to be asked to consider looking to see if ICANN is meeting the Quality Standards for the provision of advocacy support for older people affected by cancer. Was it something I might like to have a look at, as to whether we would be eligible to apply? As always Janet treated me as a volunteer so no pressure however a chat over coffee and I was happy to have a go.

I spent a couple of hours at home looking through all the audit requirements and going through all the data on the ICANN website that I thought would fit. I was pleased to see that ICANN could measure up to meet most of the requirements and was aware in a couple of areas there would be more material available by talking to other volunteers.

Sandra

I set aside a Monday morning with Janet in the ICANN office and we went through all the standards categories filling in some of the blanks. Only one area needed to be addressed which we talked to the CEO about. Later I also spoke to two other volunteers for help and input in their speciality areas, which was very useful.

A few weeks later I spent a further two mornings in the office mostly spent writing up a fair copy, and checking policies and procedures were as required. I am pleased to report that the area missing is now in place. I found it useful to complete most of the work in the office as Janet and Pat (Admin) were on hand to help with any queries.

I have found this a really rewarding task and confirmed what I know that ICANN is a good and well led charity. Going for the Quality Standards is the right thing to do and I did not find it too onerous.

Today Janet Cullingford, Services Manager at ICANN, wonders how we can best relay the stories of those we support:

Alongside our participation in the Cancer Older People and Advocacy programme, ICANN is a delivery partner and member of the Older People’s Cancer Voices project steering group. I have been musing of late on the subject of how we can best tell the stories of the people we have been working with and promote the fantastic work our advocates, especially our peer advocates, have been carrying out to improve the lives and experiences of older people affected by cancer.

ICANN staff and volunteers have started a series of workshops to increase and improve our social media presence. In the first one we gathered our thoughts to develop a strategy and plan for how we can best promote our work, and are going to do further workshops to improve our Facebook and Twitter skills.

We started a Twitter account very recently and have already gained 75 followers, come and tweet with us @ICANN_Advocacy. Andy one of our younger volunteers manages our Facebook page for us www.facebook.com/ICANNLancs. It would be great to see you on there!

The words we choose can be very important, do we TELL our stories or even SING about them. Whilst talking to many of the people who access our services, some like to ‘Tell a Tale or two….’

Many people talk about their cancer journey, however others do not feel that this truly reflects their experiences, and a journey implies a destination.

As advocates we are there to be a voice for our clients, when their ability to voice things may be wavering due to illness, age or vulnerability, but we must be sensitive that when we tell their stories it is in a way that they are comfortable with.

Margaret and Vivian from ICANN

ICANN took part in the series of films that OPAAL produced last year to promote Cancer Older People and Advocacy. One of our clients enjoyed participating so much he treasures the picture he was presented with and has requested a copy of his entire interview prior to it hitting the cutting room floor!

Janet Cullingford, ICANN

What’s the best way of telling stories that reflects the value of the support our advocates provide? Tell us what you think.

Last week we heard the sad news that one of our Older People’s Cancer Voices steering group members passed away. OPAAL’s Ang Broadbridge shares her thoughts on a recent blog post of Max’s that struck a chord with the steering group:

I met Max Neill in the summer of last year at a Coalition for Collaborative Care event; Max was sitting at the same table as me and he shared with us copies of his one page profile during the break. I’ve worked with one page profiles with adults with learning disabilities, and our Cancer Older People and Advocacy partners were also exploring them with Helen Sanderson Associates so I was interested to know more. Max told me about his bowel cancer diagnosis and how his profile helped him express his wishes; it’s always good to get chatting with someone who ‘gets advocacy’ and so I followed him on twitter.

Some time later, when we came to look for representatives for our Older People’s Cancer Voices steering group, my colleague Janet Cullingford from I-CANN suggested Max. I hadn’t made a connection between his role at Connect4Life being based in the same locality as I-CANN but was really pleased when our paths crossed again and he agreed to join us.

Although he didn’t manage to make a steering group meeting we kept in contact via social media and the telephone, Max signposted me to lots of great resources and kindly said that he’d be happy for us to share aspects of his story from his blog as part of our Older People’s Cancer Voices storytelling.

I found that everyone I came into contact with who knew Max spoke very highly of him, and his generosity of spirit, so at our last steering group meeting in January his ears must have been burning because we were talking about his latest blog post which we’re sharing with you today. This post appeared on Max’s blog at the end of December 2015:

Christmas in the Hospice

I didn’t expect to be waking up on Christmas morning in a hospice.

But my life’s like that now. The results of one scan can throw all my plans up in the air.
And the results of my last scan weren’t the best I could have hoped for.

I’m far from dying yet though. I got offered the place here at St Catherines so that I could get on top of my pain.

I’ve been taking the wrong attitude to my pain. I’ve stoically tried to tough it through during the day, leaving me knackered at night. This approach has meant that I simply haven’t left myself open to the joys that life can offer. Most nights I’ve ended up frantic as the pain bites in: no good for me, and no good for my wife who gets disturbed every time.

So over some time here, with the help of the nurses and medics my meds are being adjusted, and I’m finding out that stuff I didn’t think worked does work, as well as how to space it, how to be less anxious about it.

And being here has also given me a chance to talk to friends and family about the reality of my illness. I think maybe I tend try to protect people from my bad news. This hasn’t done them any favours, and I’ve been told off about it! The word ‘hospice’ on the front door means there can’t be any pretence. I have a pretty aggressive cancer. It’s not behaving like a normal bowel cancer. Even with the very best chemotherapy my chances are maybe one in twenty.

Of course his doesn’t mean I’ve no chance. I know people who’ve survived worse odds. I’m hoping to get onto a clinical trial, and will work with Christie if any become available. The lads play Dungeons and Dragons. They know how hard it is to roll a 20 with a 20 sided dice!

Christmas was lovely here.

It is a privilege to wake up among the dying. It is a privilege to be cared for by dedicated people, including volunteers who have come in over Christmas and the ‘dog end’ days of the year to support the people here. When the news is so packed tight with inhumanity, it is a true privilege to see countless small acts of humanity happening, in the very darkest times of the early morning, in the warmth of the cleaner’s voice as she moves from room to room, in the humour and stories of the nurses and helpers.

As I’m writing, a lovely lady has come in. She takes all the flowers donated to St Catherines’ and turns them into beautiful smaller arrangements that she leaves in every room. Every few days she comes back to refresh or replace them, she has been doing it for years and nothing seems to stop her. Humanity expressed through her artistry and persistence.

Years ago I read a great book by Boykin and Schoenhofner that seems to be a well kept secret. It’s called ‘Nursing as Caring’ and it’s always stuck in my mind far more than the technocratic rather mechanical ways of theorising nursing care.

I think the future study of great care, the understanding of what really makes good person centred support for people will actually be an inquiry into our own humanity and how to use it effectively for people. I’m witnessing that when a caring organisation enables everyone in it to find ways to express their humanity, to listen to people and deliver what is important to them, it becomes a true House of Care, a genuinely nurturing environment very different from some of the toxic institutions we seem to create so easily. It’s too easy to sacrifice our own humanity in the name of ‘professionalism’ or for countless other persuasive reasons.

The Christmas tree in the chapel here is incredibly beautiful. Children have cut out paper angels, and written messages to hang on the tree for their parents who died here: “I hope heaven is special mummy”.

I managed to spend time out at home over Christmas too, and had great family meals on Christmas Eve and Christmas day, great fun playing Articulate! I think the plan is for me to spend a few more days here, then to get home. I’m going to use that time to do some writing. Isabel Allende said “Write what should not be forgotten”. I’m hoping to write some very personal and private stuff for my family and build it into some kind of personal cancer journal that includes some of the person centred thinking tools like my life story, my hopes and fears and a few things I’d like to do. I don’t have many big ‘bucket list’ ambitions. A trip to Disneyland would be my idea of a nightmare!

I do intend to go to watch the great poet John Cooper Clarke when he appears in Preston, I saw him a few times 30 years ago. He would be the highlight of CND demos in Manchester bringing his cutting cynical humour dispensed in economical rhyme as a great counterpoint to the interminable speeches of the assorted politicians! He’s no stranger to death among his friends himself at the moment: “I could go to five funerals a week. But that many vol au vents isn’t good for you”

Time with family. Time with the people special to me. That’s what I’m focussing on right now.

On World Cancer Day Aneesah, a professional advocate from ICANN (Independent Community Advocacy Network North), gives us her take on delivering older people’s cancer advocacy:

My experience as working as an advocate on the Cancer, Older People and Advocacy project has varied vastly. Through my work I have found that one of the greatest obstacles both with professionals working in the cancer field and the clients themselves, was initially actually understanding what “advocacy” is. Although in general terms most clients and professionals alike understand that an advocate can effectively aid in putting across opinions, in many other respects I found that lines can be frequently blurred.

The ICANN team with Aneesah on the left

It can sometimes be unclear as to what an advocate can and cannot do. An example of this occurred when I was attending an appointment with a client and they were given various treatment options, which they appeared to be confused about. Once I relayed the information to the client put forward from the consultant, the client then felt that it was I as the advocate that needed to make the best decision on her behalf! I had to encourage and empower her, to explore the options by using me as a sounding board, and then to talk through together what she wanted to do.

These situations can as an advocate be challenging but upon reflection I also now acknowledge that it is important as an advocate to be able to voice concerns to medical professionals. With the same client at a subsequent appointment, when it was obvious to me that she was not taking it what was being said, I asked if we could take a break and this gave me the opportunity to fully discuss in depth the pro and cons of the various treatments that she was being offered.

This ensured that the client was able to make a clearer conscious choice and in turn made them feel more at ease as they became more fully aware of what to expect. It also meant that at future appointments we were able to prepare in advance, questions she wanted to ask and things we needed to discuss, which in turn gave her more confidence about being in control of her cancer journey.

Similarly as an advocate I found that on some occasions health professionals viewed my presence when attending with clients with some suspicion. This can sometimes be intimidating for the professionals involved as I have been under the impression that maybe they felt that I was there to act as an independent witness to ascertain any faults or failure of medical procedures on their part. However, once they become familiar with me and how advocacy can facilitate the client in a positive way they too began to see the benefits of having an advocacy service for their patients . The most prominent example being that many of the medical professionals involved in cancer treatment do not physically have the time or capacity to thoroughly go through the finer details with all their patients. With advocacy support they then have returning patients who are more confident and comfortable, and less likely to miss medical appointments, as they are more aware of what tests or procedures they are attending for, what future plans are, and what to expect from their patient experience.

Many clients are understandably confused or feel disorientated particularly when it has not been long since they have been diagnosed. They are also given a considerable amount of information which initially may be difficult to not only understand but also to accept. Being an advocate has given me the opportunity to facilitate people in focusing what they would actually like to do regarding treatment or finding out about other services that would improve their quality of life.

As an advocate I have realised that it is often easy to concentrate only on the client who has been diagnosed with cancer. I have realised that cancer can have an equally profound and devastating effect not just on the patient but the family and friends around them also, and have seen first-hand the value of support to carers

More recently I have had a client that has been diagnosed with cancer three times in the last ten years. Although she herself was going through emotional turmoil it was equally difficult for her partner to come to terms with a situation that had been ongoing for such a long length of time. In this situation advocacy was required by both. They each needed someone to listen to them as they went through the same journey encountering different emotions from two perspectives.

I would consider that my role as an advocate has been beneficial, particularly to those who are vulnerable and most isolated. I have also become aware though that even those clients who are fortunate to have an extended network of family and friends can still feel alone in their personal journey. I have come across situations where clients have felt more at ease in voicing their anxieties to me as I am someone who is independent and non- judgemental. Often people feel that there are things they cannot discuss with those closest to them due to fear, awkwardness, embarrassment, and sometimes pressure to feel positive and optimistic when they are actually not feeling these things. One of the benefits of advocacy to the client is to offload and explore these concerns.

Janet Cullingford, Services Manager at delivery partner ICANN tells us about their recent AGM and input on the day related to their cancer advocacy work:

On Tuesday 6th October Independent Community Advocacy Network North (ICANN) held our Annual General Meeting, as well as the usual AGM business, this gave us a wonderful opportunity to celebrate our involvement with OPAAL on the Cancer Older People and Advocacy Project, by showcasing the Cancer Voices presentation, including film.

Angela Broadbridge the project lead from OPAAL, introduced this with a presentation explaining both the Cancer Voices and ‘Train the Trainer’ work which we participated in.

Our audience were then invited to watch a short film designed to encourage health professionals to refer older people affected by cancer to our service. These films are also available on this blog, and on You tube. This was very well received, with people commenting on how it brought the project to life.

This was followed by two ICANN ‘train the trainer’ representatives, talking about their own cancer journeys; Richard Timson, one of our volunteer peer advocates involved with our Cancer Older People and Advocacy work, and Marilyn Eckton who is a member of our Local Cancer Champions Board. They were both wonderful advocates for the benefits of the Cancer Older People and Advocacy project. Their stories were both emotive and powerful and told from their own experiences. Whilst those experiences were quite different both had also shared many of the same issues, issues which could have been improved with the support of a peer advocate.

Since this event they have been invited by two of our local clinical commissioning groups, to present to their boards. They will talk about the project, as part of the patient experience group, to inform future service delivery.

Blog Stats

We've published "Every Step of the Way": 13 stories illustrating the difference that independent advocacy makes to older people affected by cancer and "Facing Cancer Together": demonstrating the power of independent advocacy.

You can find and download pdf's via the "About Us" page. You can click on "About Us" on the top right of this page. Alternatively you can order hard copies free from Macmillan Cancer Support by following the same link as above.

We've now also published "Time: our gift to you", 19 volunteers' stories from some of our peer advocates and cancer champions. It can also be downloaded via the "About Us" page on the top right of this page.